Becoming an empowered patient is an important part of health care. However, managing a care team while living with a rare condition may require some skill, and a toolkit may be helpful in navigating care.
From the editor’s desk – For organizations in the pituitary space, we believe it is critically important to reach out to a broader audience to make the case that these conditions, although classified as rare,
From the desk of J D Faccinetti, co-founder, an op-ed – The whole thing about misinformation is that it is dangerous. More specifically, people can get hurt, needlessly sick, and die following internet quacks’ advice. Since
From the desk of J D Faccinetti – co-founder – The company recently kicked off a phase 3 trial for their new nonpeptide oral drug for acromegaly and announced the dosing of their first acromegaly
Pituitary World News has undertaken an initiative to understand and share the complicated issues related to access to medications and costs so pituitary patients can join us in advocating for better healthcare systems. In that mesh of confusion, we find insurance companies, orphan drug manufacturers, specialty pharmacies, pharmacy benefit managers, also known as PBM’s, prescribers, and others that add to the costs and complicate access. The issues get even murkier when considering patients on Medicare, Medicaid, pricing models, and copay requirements.
If you missed this fantastic event, here is an on-demand video you can watch at your leisure. In this second installment of the Ionis’ Rare Disease Webinar series, panelists discuss acromegaly, a condition in which
From Linda M. Rio, MA, Marriage & Family Therapist – A patient who attended the recent PWN/UCSF Virtual Patient Gathering – presentation videos are available here – contacted me to ask for some guidance about finding
From the desk of J D Faccinetti, co-founder – The World Alliance of Pituitary Organizations, WAPO is attempting to provide a world view of pituitary disease through a “mapping project” that asks member organizations to